Treatment for myeloma
If you are due to start treatment soon after diagnosis, there are some questions you may want to ask. You might like to take someone with you when you see the doctor to help you to remember and understand discussions about your treatment.
If you have no symptoms of myeloma at the time you are diagnosed, your consultant may recommend that you do not start treatment immediately, but have regular checks. This is known as 'watch and wait' and can be stressful. Leukaemia & Lymphoma Research produce a booklet on ‘watch and wait’ that you might find helpful.
Most patients with myeloma will start treatment at the time they are diagnosed, or soon afterwards. You can always choose not to have treatment, even if your doctor recommends it. You cannot insist on starting treatment if your doctor does not think that is in your best interest. If you have any concerns about treatment you should discuss these with your consultant or key worker before making a decision. Leukaemia & Lymphoma Research produces a booklet about treatment decisions.
At any time during treatment, or before you start treatment, you can ask to see another specialist for a second opinion. This can be arranged either through your present consultant or through your GP.
Initial treatment will be with a combination of drugs. The choice of initial treatment will depend partly on whether you will be considered for a transplant, either using your own stem cells or those from a donor. A donor transplant is usually only considered for relatively young patients who are otherwise healthy.
Although the outcome for myeloma continues to improve it is still not curable and more clinical research is required. Therefore if there is a clinical trial (study) available your consultant may recommend that you consider this as an option. In this case you will be given detailed information and a chance to discuss it with your consultant. Leukaemia & Lymphoma Research produce a booklet on clinical trials.
Drugs used in the treatment of myeloma
Drugs used to treat the myeloma directly include:
- thalidomide*
- bortezomib* (Velcade™)
- lenalidomide* (Revlimid™)
- doxorubicin
- steroids
- cyclophosphamide
- melphalan
* These drugs are classed as novel agents; initial treatment combinations usually include at least one novel agent.
Drugs used to treat symptoms of myeloma include:
-
bisphosphonates
- reduce damage to bone and blood calcium
- erythropoietin (EPO) injections
-
granulocyte-colony stimulating factor (G-CSF)
- trigger production of white blood cells to protect against infection
-
antibiotics
- help prevent or treat infection.
-
painkillers
- help relieve bone pain.
You can find more information about medicines used to treat myeloma and its symptoms on the Electronic Medicines Compendium
website at medicines.org.uk/EMC
The treatment options for myeloma include:
-
Observation – watch and wait
- If you have no symptoms and no sign of tissue damage due to myeloma
-
Chemotherapy – usually including at least one novel agent
- Choice of drugs will depend on your general fitness and whether you are expected to have a transplant
-
Stem cell transplant
- Usually auto-SCT (using your own stem cells)
- Donor transplants may be feasible for some patients
-
Individualised treatment
- If your condition does not respond well to initial treatment or returns after being in remission then your treatment will be chosen on an individual basis
- Factors affecting the choice of treatment include your general health, treatments already received, length of remission and your preferences.
Starting treatment
When you are first diagnosed, it may be difficult to think straight but there are often important decisions, especially about tests and treatments, which cannot be delayed. If you do not start treatment immediately, you will have regular check-ups. You should make sure that you do not miss these appointments as this is the time for your consultant to discuss how you are feeling and advise whether you should start treatment.
Because the paraprotein or calcium in blood can damage your kidneys it is very important to drink plenty of fluids. It does not matter whether this is water, tea, coffee or other drinks, although alcohol should be taken strictly in moderation. If you are drinking enough fluids then your urine should be pale (straw-coloured). If your urine becomes dark this shows that you are not taking enough fluids. It is advisable to drink at least 3 litres (about 5 pints) of fluid in total every day.
Initial treatment
If there is a suitable clinical study (trial) available your consultant may recommend that you consider this option. If this is the case, you will be given detailed information about the trial and a chance to discuss this with your consultant before you are asked to decide. Leukaemia & Lymphoma Research produces a booklet and a brief leaflet about clinical trials.
The first phase of treatment is aimed at clearing as many of the myeloma cells as possible from your bone marrow. This is known as remission induction, or just induction therapy. If remission induction is successful there will be no evidence of myeloma and this is known as a complete response. Unfortunately, even if a complete response is achieved, evidence has shown that without further treatment the myeloma will always return.
Remission induction will be a combination of drugs which will always include at least one novel agent. The combination of drugs used will depend on whether you may be receiving an auto-SCT (autologous stem cell transplant) and on your general health. One of the most commonly used combinations is called CTD, which stands for cyclophosphamide, thalidomide (a novel agent) and dexamethasone (a steroid).
Remission induction will be followed by further treatment called consolidation therapy, or just consolidation. The choice of initial treatment and of consolidation treatment will depend largely on your general health. If you are fit and have no serious other medical problems apart from myeloma then the most likely choice of consolidation will be a stem cell transplant using your own cells. This is called an autologous stem cell transplant or auto-SCT.Your stem cells will be collected after you have received remission induction chemotherapy if you are in complete remission.
Nearly all myeloma patients will receive bisphosphonates from the start of their treatment. This is to try to prevent or reduce any further bone damage. These can be administered either as a monthly infusion which will involve a trip to your care centre, or a daily tablet.
If you are a younger patient, with good general fitness, and you have a brother or sister who can be a donor, you may be considered for a transplant using donor cells. This is called an allogeneic transplant but is only possible for a minority of patients and is usually only done as part of a clinical trial. This is only an option for younger patients because the risk of severe complications increases with age.
There is no fixed upper age limit, as this depends in part on your general health. Having a donor transplant is considered more risky for myeloma patients, but carries the possibility of achieving a long-term remission and possibly a cure. If a donor transplant is an option for you then the risks and benefits will be explained by your specialist and you will have an opportunity to discuss the option.
CTD is a standard treatment option if you are expected to receive an auto-SCT because the drugs are unlikely to damage stem cells in your bone marrow. Once you have a complete response, stem cells will be collected from your blood – this is done using a machine similar to an artificial kidney. A drug called melphalan is usually given before your stem cells are returned – this kills off any remaining myeloma cells and prepares your marrow to receive the stem cells. This treatment is called conditioning.
If you are older or you have other medical problems, particularly kidney problems, then CTD or similar treatment may be too toxic. In this case your consultant will discuss the best treatment options. Velcade may be suitable in this case. It is important to understand that you may still have a good response to treatment without a transplant. If you are not well enough to receive standard remission induction then a stem cell transplant as consolidation is very unlikely to be an option. Another option in this case is a combination of drugs known as MPT, which stands for melphalan, prednisolone (a steroid) and thalidomide (a novel agent).
If you are an older patient or you have other medical problems, you may be more affected by side effects of treatment. If this is the case your specialist will discuss your treatment options in detail. You can get further information on stem cell transplants in a separate booklet from Leukaemia & Lymphoma Research.
Further treatment if your myeloma does not improve or if it returns
If your myeloma does not respond well to initial treatment, this is known as refractory disease. If you do not have a complete response or a very good partial response then your consultant is likely to suggest that you consider taking part in a clinical trial. There is no generally agreed treatment for refractory myeloma and, if you are not taking part in a trial, your consultant will choose the best treatment based on what drugs have already been tried, your general condition, and your preferences. Bortezomib and lenalidomide are both drugs which can be used in this situation.
When your myeloma has responded well to treatment, but then the condition comes back, this is called a relapse. The choice of treatment for relapse is similar to that for refractory disease. You may be invited to take part in a clinical trial. If a trial is not an option your treatment will be chosen on an individual basis. Your consultant will consider how long your remission has lasted, what treatments you have already had, your general health, and your preference in deciding on your treatment. If you have had an auto-SCT then the length of your remission is very important. If you were in remission for less than 12-18 months then a second transplant is unlikely to be of benefit and not normally recommended. If you were in remission for 18 months or longer then another transplant may often be successful.
Possible side effects of your treatment include:
- Achy feeling
- Diarrhoea
- Constipation
- Extreme tiredness
- Hair loss (alopecia)
- Infections
- Low blood pressure
- Low platelet count
- Low red cell count (anaemia)
- Mouth sores
- Nausea (feeling sick)
- Upset stomach and vomiting
- Neuropathy (loss of feeling or pain in the legs or other parts of the body)
- Blood clots (thrombosis)
- Poor appetite, loss of taste
- Weight changes
You are very unlikely to have all of these. Some side effects are associated with particular drugs, for example, novel agents may cause neuropathy, which is damage to the nerves in your arms or legs. It is very important that you let your healthcare team know if you develop any of these symptoms, or if you have any other medical problems. It may be that they will suggest a change in your treatment.
Your healthcare team will give you detailed information about possible side effects before you start your treatment. You will normally be provided with written information.
If you are having treatment which might cause nausea (feeling sick) or vomiting, you can be given drugs called anti-emetics to reduce this problem.
Complementary and alternative therapies
There is an important difference between complementary and alternative therapies.
Complementary therapies are non-standard treatments which are used alongside standard treatment for your illness. There is some evidence that some of these therapies may help, particularly with side effects of standard treatment.
If you are considering using any form of complementary therapy, it is very important to tell your consultant or key worker. This is because there is a risk that some treatments may interfere with the standard treatments you are receiving. There is also a risk that some treatments, for example deep massage or acupuncture, may be unsafe if you have a weakened immune system.
Alternative therapies are used instead of standard medical treatment in an attempt to cure or control the cancer. Very extensive research has shown no evidence of non-standard treatments having benefits in treatment of any form of cancer. Leukaemia & Lymphoma Research recommends that you should not use any alternative therapy in place of proven medical care.
A booklet on complementary and alternative medicine is available from Leukaemia & Lymphoma Research.
Treatment for spinal damage
Sometimes myeloma can cause damage to vertebrae, which are the bones which make up your spine. If this happens, you may need to have an operation to repair the damaged bones and prevent your condition getting worse. If this affects you, you will be seen by an orthopaedic surgeon who will explain what is involved.
If there is spinal cord compression you may need urgent treatment, which may involve surgery, radiotherapy and steroids.
Supportive care
As well as active treatment of your illness, you may also require supportive care. Supportive care includes aspects such as prevention and treatment of infection, blood transfusions, mouthcare, diet, pain management and dealing with complications of your illness or of your treatment.
A booklet on supportive care is available from Leukaemia & Lymphoma Research.
Follow up arrangements
The arrangements for your follow-up will depend on what type of treatment you have, and how your condition responds. If your illness has responded well, it may be some time before you need any further treatment. Your consultant will explain how often you should come for follow-up checks. You should be sure to report any new symptoms or signs to your specialist team.